Stories

The power of music

Thu 27 May 2021

In this video about adapting to change, Lenny tells his compelling personal story about overcoming the complications of haemophilia, studying under COVID lockdown and how music and new treatments have changed his life.




Lenny has grown up with challenges not only from his haemophilia, but also from other disabilities he acquired through trauma at birth – problems that affect his eyesight and mobility, cause a build-up of fluid on his brain and a palsy, and other learning difficulties. His hearing, however, is acute and he has gravitated towards music as something he loves and now as his career.


Lenny playing piano
Photo: Lenny
 
This last year has been both difficult and exciting for him. He was working to complete his Bachelor of Arts degree in music and psychology, but COVID-19 restrictions meant that he had to participate on Zoom and with his sight problems, this made his group assignments difficult. When he explained his visual difficulties to his fellow students, they were more understanding and the experience of studying improved for him. He has now completed his course – a great achievement!


Lenny graduating
Photo: Lenny
 
Another really positive change for him has been switching to a new haemophilia treatment. Because of his vision impairment, he had always relied on his parents to infuse his treatment and had a ‘massive needle phobia’. The new treatment is injected sub-cutaneously, under the skin, and is much less complicated. To Lenny’s delight and surprise, he is able to manage his treatment himself, which has meant a whole new independent life and future for him.

For me, life now feels more in control because I can self-infuse instead of relying on my folks.’

Lenny with his lego models
Photo: Lenny

Thanks to Lenny for sharing his story.